Below is a blog post from Victoria Thomas, Head of Public Involvement at NICE about their plans to improve how NICE works with members of the public. This is reproduced on the PIF website with the kind permission of NICE.

Moonlighting for the ‘Thought Police’

I’ll never forget the first presentation I gave when I started working at NICE. I stood in front of a group of respected experts, ready to tell them about how and why we were committed to listening to patient voices.

Some looked on with keen interest, others mild indifference. And then one, sitting right next to me muttered under his breath ‘here come the Thought Police’.

I’ve been called many things in my time but this was new. The idea that I was somehow representative of Orwell’s imagined secret police of Oceania seemed a little excessive! It also revealed his ignorance both about Orwell’s terrifying vision, and the purpose of involvement.

In Orwell’s 1984, the Thought Police intervened when anyone challenged ‘Big Brother’s’ authority and the status quo it represented.

We do just the opposite. We involve people in our work, be that patients, carers, charity workers, etc., to challenge received and accepted wisdom. To ‘speak truth to power’, and to allow us to look at evidence through a fresh lens – that of the person most directly affected by the recommendations we’re making.

Our commitment to hearing patient and public voices is a now routine part of how we develop our guidance and standards. And as we do in all our work, our approach for involving people must also be evidence based.

Focusing on the role of lay people, the term we use to describe members of public who bring personal insight rather than academic or clinical expertise, we have looked at all the relevant evidence of good practice in involvement.

We ran a public survey and held a meeting with many organisations across NHS, social care and public health, asking people to tell us what our priorities should be and if there was anything we could do better.

We also spoke to colleagues working here at NICE to find out what was important to them when supporting lay members.

We’ve taken all this information and converted it into a set of principles and proposals for how we can improve what we do, and ‘future proof’ the work we do with lay people as NICE continues to change and develop.

NICE is a vastly complex organisation and we want to make sure that, for the lay people who want to work with us, our ‘front door’ is open and welcoming.

We want to make sure that we harness and maintain people’s expertise across our programmes, and let them know what we’ve done with the information they give us.

You can access the new NICE proposals: ‘Improving how patients and the public can help develop NICE guidance and standards’ here. The consultation is now open for comments and will run until 28 February 2017.